Florida's First Choice for Autism Support

Posts tagged ‘USF’

Having a Sibling with Autism

kids-walking-image

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.” – Albert Camus

Admittedly, having a sibling on the autism spectrum can be stressful at times, especially if the two of you are close in age. Growing up, it’s unlikely you’ll receive the same attention from your parents that they do. That is, of course, nobody’s fault, but for a young mind it can be hard to comprehend why your brother or sister is getting more attention than you. There’s also the unavoidable issue that if you’re not used to the behavior, dealing with someone (especially a child) with autism can be difficult. Many are prone to outbursts or tantrums, can’t fully understand social cues, don’t take an interest in a wide variety of activities, etc. But there’s so much more to it than that. There are few things more beautiful than the bond between siblings, and just because yours may have ASD doesn’t mean you can’t form that special relationship. Here are some of the unique advantages to having a sibling with autism; hopefully after reading this, you will gain a greater appreciation for your sibling.

First of all, you will gain a unique perspective of the world vicariously through your sibling. Kids on the autism spectrum almost always have a different outlook on life, and see the world in a unique, individual way, totally outside the norm. As the sibling without autism, you will learn very early on that the world is in no way black and white. There is no absolute binary on how things can be done, but rather, just like autism, there is a whole spectrum of possibilities. With good parental guidance, you will come to learn that individuality is something to be cherished and valued, not shunned. From your experiences dealing with an autistic sibling, you will go into adult life with an open mind and the ability to see the world from multiple viewpoints. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity.

This brings me to my next point: creativity. One of the few universal traits of ASD is a difficulty in communication skills. But siblings, as I mentioned before, have a special and unique bond that allows them to understand each other on an entirely different level, autism or not. Considering the uniqueness with which those on the spectrum see the world, often being very creative, that rubs off on the other sibling. Simply having that connection exist and gaining firsthand exposure to such an exceptional worldview opens the mind to new creative potential. Desires to express oneself through music, visual design, writing or the arts can manifest in grow for both siblings, creating a symbiotic relationship.

The last point I want to talk about is how it can make you a far more accepting, compassionate person. Like I pointed out, having a sibling with autism can be a difficult thing, and their behaviors erratic at best. However, I believe this also presents an opportunity to grow into a better sibling and thus a better person overall. Growing up, you naturally come to know your siblings better than anyone else, and how to deal with all their little nuances. Dealing with the worst behaviors autism has to offer all throughout your formative years molds a person into someone who can empathize with just about anyone, and I believe you become all the better for it.

I would like to recommend this blog from Autism Speaks, from the perspective of a young lady whose brother has autism. It’s a great insight into everything I’ve been talking about, and I enjoyed reading it immensely.

  • G. Sosso

Autism & Navigating the Internet Safely

Ah, the internet. It is a vast place, with an almost infinite number of possibilities. Chances are, if it exists, it’s somewhere on the internet, and you can find it if you look hard enough. In fact, nowadays it’s difficult to get by without embracing the online world. However, this also comes with some great risks, and the internet can be a dangerous place if you don’t navigate it responsibly. I’m no expert, but as someone who has been using the internet my entire life, I’d like to think I’ve got a pretty good grip on the dos and dont’s of the web. I will do my best to share some of the most important ones with you, in hopes that you have a safe and enjoyable experience.

The first and most important thing is to never give out personal information, especially on a public forum site such as Facebook or Twitter. Examples include, but are not limited to: your Social Security number, home address, phone number, or bank and credit card account numbers. Many of these may seem fairly obvious, but people make the mistake every day. Additionally, never reveal any personal information which can be used to track you down in real life, so things like your school, sports team, clubs, and your place of employment should be off limits.

Remember, everything you post on the internet is there permanently. So make sure anything you post is something you’re okay with other people hearing. Basically, if you wouldn’t say it to your mother’s face, don’t say it online. You may think venting about how terrible your job and boss are, but keep in mind: that can come back to bite you. If the company you work for sees what you posted, they can and will fire you. This article is a perfect example. Just like in real life, you can never take back something you say online, so choose your words carefully!

Cyber bullying is a major issue in today’s day and age, like it or not. Cyber bullying is any form of harassment that takes place online instead of in person, and while that eliminates the possibility for any physical harm, it can make the emotional damage even worse considering the anonymity provided by the internet. According to this article, “Pupils with special educational needs are 16% more likely to be persistently cyber bullied over a prolonged period of time.” If someone starts getting nasty with you online, don’t give them the time of day. Just like regular bullies, they’re most likely just taking out their own personal problems and insecurities on those who are less likely to be able to defend themselves. It’s not worth your time to give them they attention they crave, and you’ll only be making yourself miserable in doing so.

Finally, and this one is crucial. Unless it is purely for business purposes, never agree to meet with someone you meet online in person. It’s a well-documented fact many people on the autism spectrum are naturally more trusting than the general population. While this is not always a bad thing, placing too much trust in a stranger can be dangerous, and it’s difficult for those with autism to discern that. Statistically speaking, there is a higher probability that the friend you’ve met online is a good person who means you no harm, but there’s also a lot of creeps out there who are looking to take advantage of young naïve individuals, and I don’t think I need to go into the things they’ll do. There have been so many cases of this, linking to one or two examples would be pointless; a quick google search will show you the true depravity of some people. Always keep interactions with strangers purely anonymous while online.

G.Sosso

Preparing for College with Autism

Speaking from personal experience, I know that going off to college as a young adult on the autism spectrum can be an overwhelming prospect, one that many will not be able to overcome. The thought of leaving home for college is scary for every high school graduate; I mean, we’re still kids at that point. But considering the unique challenges that face so many on the autism spectrum, it can be exponentially more difficult. My first attempt at university immediately following high school was, to be completely honest, a train wreck. However, I believe that every failure you make it through brings you one step closer to success, and I learned and grew a lot from that time. Now almost three years later and with much more experience and knowledge under my belt, I have a far better understanding of what it takes to be successful for those with autism looking to make it in college. I would like to share these thoughts with you all, in hopes that it will give you a better idea of how to overcome certain obstacles.

The main issue that I and so many others face is the sudden leap into independent living. No longer will mom and dad be there to bail you out of your problems, or sit you down and force you to do your homework. It’s harsh, but that’s just the way the world works. Preparation BEFORE going to college is absolutely essential. Now, assuming you were diagnosed with a disability before the age of 16, you should have had an Individual Education Program (IEP) set up throughout high school. The IEP is all a part of “transition planning,” which, according to this article, is training or experience, “from hygiene to banking to job training, driver’s education, sex education, college admissions and more,” all things which are never really covered in school, but are immensely important life skills.

But it doesn’t stop there; in fact, the journey is just beginning. Once you get to school, there are plenty of resources available to you, and it’s essential that you utilize them as much as possible. At USF, there’s the Students with Disabilities Services and just about every university has something similar. These people want to help you, but it’s your responsibility to go to them, they will not come to you. If you take away any one thing from this, it’s that you need to become an effective self-advocate. Is there pressure on you to take on more of a workload than you’re comfortable with? Make sure to let the advisor know. You only have to take a few classes at a time, there’s no rush to finish college as soon as possible.

On the Autism Speaks website, there’s a large and comprehensive list of resources for post-secondary education that I suggest you take a look at. Most importantly, remember to relax and pace yourself, stress can ruin your life in college if you let it!

  • G. Sosso

Transitioning into the Working World

Out of all the issues we try to address here at CARD, there is perhaps none more important than how can we help kids on the spectrum, who just finished, or are finishing, high school successfully transition into the adult (working) world? It can seem like a monumental task at times, even downright impossible, but it’s not! I was in the exact same position when I graduated from Lakewood Ranch High School back in 2013, and my life sort of stalled until I found CARD, and of course the Learning Academy. They helped me a lot, and hopefully I can do the same thing for anyone reading this.

According to the Autism Society via the Bureau of Labor Statistics, as of “June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed; meaning only 16.8 percent of the population with disabilities was employed (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed).” The difference between the 2 is enormous, and clearly speaks to some sort of correlation; such a gap cannot be mere coincidence. Now, to be fair, part of the blame does lie on those with the disabilities. Less than 20% of people on the spectrum were looking for work, and that is a huge part of the problem.

Many employers hear the negative stereotypes associated with workers with mental disabilities, and don’t want to take the risk of hiring them. Things like laziness, the inability to follow orders, taking longer to accomplish tasks, lack of social skills, etc. are just some of the reasons companies aren’t hiring from this demographic. And it cannot be denied that, for many young, and even full-grown adults, these things are an issue that plagues them. But, just like any other problem, it can be fixed if both the boss and employee are willing to work together and be understanding. Perhaps if more companies realized this, they could see some of the positive attributes people on the spectrum can bring; i.e. resourcefulness, creativity, unique perspectives and the ability to point out the little details others might miss.

So now we know a few of the issues, but how can we go about fixing them; i.e. making the transition? I think this article sums it up quite well, “For young adults who go directly into the employment world, it will also be critical for them to focus on their strengths and what brings them the greatest joy. They will want to explore different areas of the job market. Different work environments may help different individuals to excel. There are many opportunities for supported employment, where the employer offers supports to a worker with different challenges. Other individuals will require less support and may do better independently.” Basically, you need to find your passion, and there are many organizations that can help you out with that, including CARD!

Source: http://www.autism-society.org/what-is/facts-and-statistics/.

 

G. Sosso

Autism Moms: Things to Remember

With Mother’s Day 2016 just around the corner, I’ve been thinking a lot about my own mother and how much I appreciate her and everything she does for me. I wouldn’t be where I am today if weren’t for her, so thank you so much; I love you! Today I want to talk about some things that “autism moms” may experience or should know about. I’ve compiled this list from various sources, including the internet, my own mom, and the moms of some of my friends from the Learning Academy last year. I included a few entries that apply for high functioning autism, and some for low functioning, so as to not discriminate against either demographic. Some of these things may seem obvious, but honestly speaking, being a parent to kid(s) on the spectrum is a challenging thing, and sometimes being reminded of these things can be a huge help in keeping us grounded. So here’s my list of the most important things you will experience as an autism mom:

  1. You will become very flexible. Kids with autism can often be unpredictable and don’t always have the same thought process as neurotypical children, so you will have to learn to adapt to their behavior. Don’t expect a “one size fits all” parenting style to work very well.
  2. At the end of the day, you will have the patience of a saint. For a while, your child will test your sanity, but you will come out stronger for it in the end. My mom used to be quicker to anger, now she can take anything that comes at her.
  3. No matter where your child falls on the spectrum, you will come to be thankful for progress of any kind, be it vocal, academic or social, so much more than the average parent. You may even feel happier than they do!
  4. Like it or not, you will learn basically all there is to know about autism itself. The moms I talked to formulating this list seemed to know more about autism than some neuroscientists, which I found humorous.
  5. This one is very important: please make sure you take care of yourself occasionally. You won’t be able to take care of your kids if you’re too fatigued to do anything. Treat yourself to a night out every now and then.
  6. You may or may not go crazy at times thinking about your child’s future. Just kidding… you will absolutely go crazy! All parents worry about this, but when you have the unpredictability autism brings like I mentioned before, it can really dominate your mind at times.
  7. Above all else, you will truly learn to appreciate what you have. Kids with autism are just as wonderful as those without it, and if you just have the determination, you can make them become a success through a loving relationship.

Make sure to show your appreciation this Mother’s Day, and to all the wonderful moms out there, thank you for all you do!

gage and mom

My mother and I

  • G. Sosso

Autism Awareness Month is Not Enough

As many of you might already know, April is Autism Awareness Month! All around the world, groups like CARD are doing their best to bring attention to the unique struggles people on the spectrum face on a daily basis. There’s even a special campaign every April 2nd called “Light it up Blue,” which, as the name implies, is a day to wear blue, the color that represents autism. As someone who realizes how generally underrepresented and unappreciated the ASD demographic is 11 months out of the year, I can at least be thankful there’s a month devoted to the cause of helping these people.

I’d like to include some pictures of some of the world’s famous landmarks that participate in Light it up Blue, it’s really a beautiful thing to see:

There are many others, from famous Buddhist Temples in Asia, to the Eye of London and the White House; I suggest you look them up as well!

Anyways, the thing I would like to talk about is the idea of an Autism Awareness Month itself. Now, while I said before that I do love the idea, I (as well as many others), feel that it’s not enough. According to the Autism Society, there are more than 3.5 million Americans alone with ASD, or roughly 1 in 68 births, and that number seems to be climbing constantly. Too many on the spectrum are directionless, unable to find help, don’t have the necessary life skills to thrive in the world, and these things aren’t their fault. They just need the proper guidance, and an awareness month dedicated to them is a great first step, but we need more.

Autism awareness is something that should take place all year long, not just in April. The fact of the matter is, while many people who normally don’t think too much about autism are more cognizant of it for 30 days, once May 1st rolls around, they’re back to forgetting for another 11 months. This is how many feel about other dedicated months, such as Black History month or Women’s History month. Until the day where individuals on the spectrum are fully integrated into society (or at least as well as we can be), let’s focus on making Autism Awareness Month “Autism Awareness Year.”

  • G. Sosso

Farewell to CARD

As I “retire” from CARD-USF to move on to a hundred other activities, I have been reflecting a lot lately on: how much I will miss everyone at CARD; how much I will miss USF, which has been part of my life since 1967; how much I will miss being a librarian, even if I’ve been kind of a “pretend” one for the last couple of decades; and how much I will miss keeping up on the latest research, publications, and news, though the osmosis effect of social media ensures that I won’t miss much.

Mostly, I am thinking about how much things have changed for families since my daughter was diagnosed in 1992:

  • Her original diagnosis of PDD-NOS no longer exists as a diagnosis
  • Asperger’s disorder no longer exists as a diagnosis
  • Children diagnosed with autism spectrum disorders (ASDs) in the early 90s were very likely to be placed in programs designed for children with emotional/behavioral disorders, or intellectual disabilities, but rarely in programs designed for children with ASD diagnoses. Very often, children with ASD were placed in center-based schools. We have watched education evolve from a dearth of teacher preparation and services, through developing expertise thanks to professional development efforts of school districts and organizations like CARD, through segregated settings at neighborhood schools, to a current landscape in which many more students are fully or partially included with their peers in regular education classes and activities.
  • Interventions have gone from consequence-based, punitive “treatments” to antecedent-based, positive supports that seek to make the whole environment supportive and oriented toward increased communication and prevention of challenging behaviors.
  • Community venues such as child care sites, summer camps, restaurants, movie theaters, theme parks, resorts, zoos, orchestras and museums have gone from being fairly unwelcoming environments, to seeking out training and support from CARD to open their doors and programming to customers, visitors and employees who have ASD.

One of the most beautiful advocacy movements that has emerged over the past twenty years has been the self-advocacy movement working for acceptance of all individuals with or without diagnoses. This movement has recently been represented most visibly by the author Steve Silberman, in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published by Penguin Random House in 2015. Many public libraries have this book, or can get it via inter library loan if you are interested in reading it. This movement seeks to move from “awareness” to acceptance. Once individuals who have traditionally been marginalized by society develop their own voice and presence, it becomes impossible for them to continue being ignored, and changes happen quickly.

As the parent of an adult with ASD who is very challenged by social & communication issues, I will take with me into retirement a renewed sense of my daughter as an individual with unlimited potential who deserves to be accepted fully by her community, even if she needs a bit more assistance in developing her own voice. But it should be her voice – not the voice of well-meaning people thinking they are speaking for her.

Thank you CARD staff, families and friends, thank you everyone in CBCS and USF for the gifts of your friendship, wisdom, and insight. I leave here the better for having known and worked with all of you.

– Jean

jean and anna 2

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